Anyone here has a child or spouse with Epilepsy?

Question

My 12 year old daughter was diagnosed with epilepsy about a year ago. She has generalized seizures sometimes at night, plus partial seizures during the day sometimes.
She doesn't have the epileptic scream to wake me, and i have slept through 2 of them.
How do I deal with this without wanting to make her sleep in my room and making her feel like a baby?

-She is on Trileptal, 2x a day.

Answer 1

Wow. I'm sorry to hear that. But I'm an epileptic myself...I have grand mal seizures. My seizures, however, are very well controlled. I take Dilantin and the last time that I had a seizure was in 1997. The reason I had it then was because my doctor abruptly took me off of the medication because he feared it was linked to a kidney problem that I had. (I'll never forget that...I had about 8 to 10 GRAND MAL seizures in one day--my husband was at work too)

I don't believe that there is such a thing as "an epileptic scream". When my seizure weren't well controlled (due to my lifestyle), I woiuld get the feeling, called an aura, that I was going to have a seizure. However, when the seizure actually came, it was like a thief in the night. In fact, I've had seizures while being in the middle of conversations, in classs, and once, while having sex.(that wasn't funny then, but I can laugh at it now).

What I would suggest to you is that you make sure that there is no furniture near her bed, and anything that she may hit her head on should be padded. She should wear the type of night clothes that will not constrict her breathing if she should have a seizure. Additonally, you should make sure that her covers on her bed aren't too heavy so that she can't smother.
if a seizure should occur.

Other than that, I would also suggest a baby monitor. Even though you don't want to make her feel like a baby, you should explain to her that it's for her own well being. (But I understand that situation too. When I first began having seizures at the age of 14, I HATED if my mother even reminded me to take my medication. I guess it was because I didn't want to feel like a baby either.)

Well I hope that I was a bit helpful. But tell me...doesn't she take some kind of medication to help control her seizures?
Please see the website below.

My medication controls my seizures so well that I drive a car, I go bike riding, I do everything. With the exception of being a mortician, I live a perfectly normal life.

The best of luck to your daughter and you.

Answer 2

My boyfriend and his brother both have epilepsy. My boyfriend has what's called "Absent Epilepsy". It's very scary indeed. He was on Topamax and that didn't work so he is now on Carbamazepine and it works better. His brother has a mild case of epilepsy so Topamax works fine for him. I am afraid there isn't anything you can do except put her on medication and watch how it works for her. My boyfriend was diagnosed 2 years ago and his brother just a few months ago. Because his condition can affect his heart having the worse case of epilepsy, he was asked by his cardiologist and neurologist to keep a journal which I have been doing for him. In the last 90 days he has had less than 10 epileptic seizures. So it is very important that she gets on some medication to help her not have many seizures or any at all. My boyfriend never remembers having the seizure and that scares me. He also forgets who he is at times and other things. This isn't easy to cope with, just do what you can. I just don't think you'll be able to do anything while you are both asleep. She may not even realize she is having the seizure and sleep through it. My boyfriend has had that happen already. I wish I knew what to say to help you but what people are saying on here makes no sense. There is nothing you can do. I wish you much luck. God Bless you and your child!

Answer 3

might take more time than you want but there are dogs out there that can detect a seizure before it comes on. the dog (like a seeing eye dog for the blind) can be trained to warn the person who has the problem so they can go to a safe place, or warn someone else. So the dog could wake you up a minute or two before it happens. My sister in law is living with us and has seizures and my untrained dog will paw at her face about a minute before they come on. however, shes not trained to wake us up so it doesnt help at night. its something to look into though

Answer 4

The camera type monitor with the volume turned up high, you will hear the movement and what works best for your daughter.Use the screen to determine seizure activity from just normal sleep movement. I addition, no offense to others but each person is different and meds work differently on each person. If what she is on is not working do not accept that, push for trying other meds until you find the one that works best for her.

Answer 5

She should be on medication to control her seizures, and I'm really surprised that her doctor didn't prescribe any. A good one to try is Keppra. I know someone who had frequent seizures, was prescribed Keppra, and hasn't had one now for four years. Ask her doctor about it.

Answer 6

put a baby monitor next to her bed then she can have her room and space without having to sleep wiht u ... my husband had epilepsy but grew outta it...

Answer 7

A baby monitor under her bed or secretly hidden somewhere.

Answer 8

I am not trying to disregard this but go to ivillage.com and alot of mothers are on there and they can relate to what is happening.